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Tag: #hellpsyndrome

I think most pregnant women throughout their pregnancy think a ton about how their husband will be as a father. I know I did. We’ve always had a very equal partnership and I wondered if that would continue as we grew our family, since I had heard the opposite from so many other women.

Scott goes above and beyond for our son every day. I don’t know a dad who does more for his family and though I try not to get too braggy about all he does for us, I’m always making an effort to thank him and tell him how much I appreciate all he does.

In light of Father’s Day, if there is one day of the year that I am going to brag on my husband, this is it.

It started in the earliest days of my pregnancy. Him making sure I had enough sleep, proper nutrition, exercise, and foot massages – even though he can’t stand feet. It continued when we learned of Luke’s critical congenital heart defect – he researched, asked questions, became an expert on his son’s heart. I watched closely as he redid a bedroom for his unborn son – rebuilt a closet and chose paint color and decor. I saw his physical labor of love and determination to make things just right.

I remember the look on his face the night I was admitted to the hospital in a critical state, with the news Luke would have to be delivered early. He stayed by our side the entire weekend. He took care of us – of everything – when I was not even able to care for myself.

And when Luke arrived and was transported to St. Christopher’s Hospital for Children, he joined him immediately. He texted me photos and videos of our son for 3 days because he knew how hard I was struggling, having to be separated from them. I remember the phone call he made to me, such pride and joy and love in his voice, telling me what a “cool little dude” he is and how I have to focus on getting better so I can join them soon.

Scott was Daddy, but he was also Mommy to Luke in the first few days when I could not be present. He changed our son’s very first diaper, gave him pacifiers, participated in his care, held him and sat and talked to him for hours on end, day and night.

We were supposed to be there together – partners, parents – yet he did it all alone, and he loved him enough for the both of us.

I remember how he researched breast milk and proceeded to inform me of all the many benefits and the differences between foremilk and hindmilk and I recall thinking to myself, “who IS this man?”

I so distinctly remember how on multiple occasions he helped hold my pumping parts in place because I did not have a hands-free bra and hadn’t anticipated that I would need to pump because I wanted to nurse. How he brought me hot compresses, bottles of water, made sure I ate every meal.

I remember how he was my biggest cheerleader and supporter during the toughest days…and how he loved Luke more than anything in this world and would do anything for him, including waking up multiple times a night to feed or comfort him. How he would never leave his side.

I remember the way Luke slept on his chest for hours and how he loved every second of it. I remember the way his face lit up the first time he said “da da,” ate his first solids, rolled over and crawled, and took his first step.

I could go on and on about how he helps so much around the house, cooks dinner for us most nights or does sweet things like wash my car or refill my gas tank when he notices it is low.

And how during the extremely stressful and scary times of caring for a child with multiple medical needs and never-ending diagnoses, tests and procedures, brings you to your knees, he is always there, kneeling right beside me or ready with strong and open arms to lift us all up.

I think the bottom line is that he cares so much about our family that it’s natural for him to be a wonderful partner and father. It’s a quality I very much admire in him and one that I know will set a good example for Luke as he grows and learns about love and relationships.

I feel so fortunate to be able to celebrate Scott on Father’s Day, taking a moment to acknowledge all of the things he does, big and small, and how they make our time together as a family so special. How he always makes us feel so very special and loved.

GUEST BLOGGER: Laurel Youse

Monday, May 11, 2015 – Part 2: Motherhood

Mothers dig deep. We open ourselves to love in spite of the cost, in spite of the unknown. We harbor great burdens, hide sorrows only our hearts can know, and we relish in great victories and amazing joys. We cling to hope that is steadfast and sturdy and cherish the moments when a tiny, smiling face, an intentional and knowing glance, the tight squeeze from a fragile hand, can cast all doubt away. We find strength often times not of this world. We find the power to love unconditionally and without reserve. We find faith. Or maybe it finds us.

In the months and year that would follow, our little growing family would find itself faced with multiple challenges – a diagnosis of HELLP Syndrome for me, requiring early and immediate delivery of our Luke, heart surgery at St. Christopher’s Hospital for Children for Luke and the diagnosis of a kidney defect, ongoing physical and occupational therapies, and always more tests and procedures. And in the midst of all this – this path I certainly did not choose – I have found joy. Yes. Beautiful, bountiful joy.

While life can still be scary and uncertain, and although the original dreams I once had are gone, they have been replaced with better ones. Brighter ones. More meaningful ones. The plans I made – expectations of the perfect birth, hearing his first cry, snuggling my newborn on my chest, nursing my son – those things still hurt a little. Some days, they hurt a lot. Maybe they always will. Developmental milestones – I will never take for granted a spoken word and no step will ever be considered ordinary. Yet, I’ve had great privilege – the honor – to know my child more intimately than most. I’ve sat at his isolette for hours, memorizing every feature, every crease and line. I’ve fought for him, prayed for him, whispered into his ear how loved he is, how his mommy is always there. I taught him how to drink from a bottle to rid him of that dang NG! I’ve shuffled bunches of machines and tubes and wires just to hold my baby only to have the pulse ox alarm with every slight movement. I have navigated my way through medical jargon and cared for my child in ways that are natural and ways that are very unnatural. I have learned him like the back of my hand. I have seen his heart from the inside. And his heart – his beautiful, perfect heart – was broken so that mine would one day heal.

This year – MOTHERHOOD – has taught me FAITH, JOY, PATIENCE, LOVE…and even more FAITH.

Luke’s heart taught me how to use my own: To be present in all the moments of life because tomorrow is never promised to any of us. So laugh. Cry. Give sloppy, wet kisses and squeezy hugs. Be positive – even when it’s hard and you think you can’t; dig deep. Give freely – your time and your love. Be not only a pillar, but an example of strength for your family. If you are reading this you have likely been touched by a child and although our journeys may be different, in many ways they are much the same. The story in your heart is the universal story of mothers. A mother’s heart always knows, always believes, and always whispers hope. Each one of our children has been born to us of perfect love and in that love we too, have been reborn as Mothers.

There is faith. There is joy. There is kindness. There is purpose in pain – we have to find it. And when we do, embrace it – as tightly and lovingly as a mother embraces her child. Nurture it and watch beautiful, bountiful life flourish. The gift, the blessing, of motherhood.

Guest Blogger: Laurel Youse, mother of Luke

Friday, May 8, 2015 – Part 1: Mother’s Day

I was never really any good with kids. Growing up, I rarely babysat and the times I did, I really didn’t care for it much. Once I actually figured out how to hold the baby, it was guaranteed he or she would cry. If anyone had told me when I was younger that they thought I would be a great mother, I could be certain that they were lying. As a child, I didn’t have the best role model for motherly love – frankly, my experience taught me what a mother is not. My inept maternal instinct led me to believe it was best I did not venture in to the realm of children. That was all up until the last couple of years, when everything changed.

When Scott and I married 10 years ago, our life was perfect – just the two of us. We enjoyed our carefree lives –worked hard, played hard. We did what we wanted, when we wanted. Life was good and life was simple. And then it came calling…that still, small voice, deep from within – we wanted more. It doesn’t happen for everyone, but for us it did – that parental calling – the desire to be someone more and give to someone “more.”

This Mother’s Day marks three years since I knew I was pregnant. I say “knew” because it’s true – I knew long before a test could tell me. In that instant, that sweet moment in time, I was changed – at a cellular level, I was altered. I now had a fire in my soul and an instinct to go with it.

Just as the tiny baby in my belly was growing, so too, was the love and joy quickly building in ways I had never before imagined. The moment it all became very real, that defining life moment, as I lay on an exam table at St. Christopher’s Hospital for Children and first heard the words “life-threatening,” “critical” and “heart defect.” My breath caught in a place somewhere between Heaven and Earth and I could hear my own heart beating out of my chest. Time stopped. All of it. Within mere hours every dream, every plan I had made was replaced with fear. How could I love a baby I might lose? How could I open myself to the possibility of that devastating pain? But I did – how could I NOT?

I vowed to love and protect my son – every ounce of him. In the weeks leading up to his diagnosis in utero, something within me already knew. I have no way to describe it, only that my heart was being prepared for Luke. I would love him if he were born with a syndrome, if he were born with a deformity, if he were born in any way other than what this world deems “perfect” because for me, through the eyes of his mother, he was already perfect in every way just as he was. My commitment to love him was pure and honest, and I knew it might even hurt. It has hurt. A lot.